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Advice for parents at the hospital
More words of advice for parents of preemies from Park Slope Parents members
Carter’s: “Not everything is super expensive but some of it is but it's great. And they deliver quickly. If you sort by price you can find some good deals.”
“You can get preemie clothes at Babies“R”Us. It's usually a VERY small rack.”
“Clothes were not a concern for us for a long time because NICUs generally want the babies in only a diaper and hat until they're more stable.”
“Footie pajamas were key, as they put sensors on her feet and this way she couldn’t pull them off.”
“In very practical terms I would say that sleepsuits with poppers are better than zippers - in ICU and for monitoring after operations they often have quite a lot of wires, and it’s easier to get them through poppers than zippers—I found that out the hard way first time!”
The Premature Baby Book: Everything You Need to Know About Your Premature Baby from Birth to Age One, by William Sears: “It was informative but non alarmist.” “An excellent resource and has a lot of great ideas.”
Preemies: The Essential Guide for Parents of Premature Babies, by Dana Wechsler Linden, Emma Trenti Paroli, and Mia Wechsler Doron: “It's very good, and not alarmist despite the hundreds of things to be alarmed about.”
Early: An Intimate History of Premature Birth and What It Teaches Us About Being Human, by Sarah DiGregorio: Read more about this newly released book in the New York Times!
The Motherhood Center has a free NICU Support Group.
Graham's Foundation is a not-for-profit whose mission is to provide support to parents of premature babies.
Advice for parents at the hospital
Interactions with doctor/nurse/parents
“Be very very nice to nurses. They're amazing, and it'll make [baby’s] life a lot better.”
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“Keep asking questions, being as involved as possible, but remember that NICU doctors are notoriously detailed about current minutiae and closed lipped about outcomes and futures because they just can't know.”
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“The nurses and doctors in the NICU are the most dedicated people you will ever meet. Not only is the baby's care extraordinary (and miraculous), but they keep a close eye on the parents and offer every conceivable form of support, guidance, info, etc.”
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“We called the NICU regularly to ask nurses how they were doing, how much they ate, did they have any setbacks, etc. Some nurses are less than friendly, but it's your baby and your right to ask.”
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“Nurses will tell the parents that they should spend more time at home, because when the baby comes home they [will] be even more tired. Don't listen to them if you feel you have to be with your baby.”
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“NICUs are amazing places, you desperately want to get out of there, but they also become like a real family all the same. Be very very nice to nurses. They're amazing, and it'll make her life a lot better if she's on good terms with them.”
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“There'll be a huge amount of ups and downs, the greatest roller coaster of my life. Keep asking questions, being as involved as possible, but remember that NICU doctors are notoriously detailed about current minutiae and closed lipped about outcomes and futures because they just can't know.”
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“The GREAT part is that you have full time nurses that will help you learn to hold the baby, bathe him, feed him, change a diaper (I knew none of this and couldn't imagine how people handle it that get to go straight home!)”
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“Being an advocate is so important—there were a few times when I shooed some of the staff away, because the baby was sleeping and I didn’t want her to be disturbed. I asked if it was an urgent check or required by the doctor, and if not I asked them to please come back in a bit so she could continue resting.”
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“I also remembered little tricks that some nurses or techs used, and if another was having trouble getting a blood pressure or temp, I showed them what we had seen. I also told them we really wanted to go home as soon as they were comfortable, and we ended up released a few hours earlier than they had initially said.”
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“Surprisingly I found that hospital staff [weren’t] always that knowledgeable or supportive, and tended just to assume that she was bottle-fed, so it helps to stand your ground on this and take with you everything you need.”
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“Remember you are already an amazing advocate for your child. You can be present, touch and cuddle your child almost all the time. If someone says please leave the room, or implies you can’t touch your child during a dressing change/procedure, ask why? Try to remain calm, because at times caregivers are asked to step out if they are making their children more upset by their anxiety/sections/tone of voice (and not being at bedside already makes kids upset). It is transference and kids are very susceptible to it. Ask to accompany your child into the operating room until they are asleep!”
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“Social workers can be helpful for advocacy but you shouldn’t hesitate to just advocate for your child and what you want. We had to do a lot of that in the NICU and don’t regret it one bit. At the end of the day only you will be the best advocate for your child, they have to listen to what you say within reason, and you will be there for a limited time. So don’t worry about everyone ‘liking’ or agreeing with your decisions!”
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“The first thing I would say is that all the staff and nurses at these pediatric ICUs are super on top of things. Our experiences with the nurses especially were generally super positive. I would of course make sure that I internalize any information they give you so that you know exactly what kind of protocol they have planned for him post surgery. But just know that these are generally very experienced staff who only want the best outcome for your child.”
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“On top of the nurses, there are also periodic visits from RNs and doctors so don’t worry, you will never be left in the dark about anything. The staff is there 24/7, you will never be alone.”
Caring for baby
“We also had some maracas that she likes to shake, were good for a smile and made fun noise, and we played some favorite songs on our phones.”
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“Of course the most important thing is for the baby to be eating. If at all possible if she can start pumping to get breast milk for the baby, I would highly suggest it. If she needs any help there are some teas out there to help with getting the milk flowing, Marshmallow Root worked really well for me, as well as the Nursing Tea from Yogi, I think.”
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“A lot of times they WON'T let you breastfeed only because it burns a lot more calories for them and they want them to pump up (so they may feed them from a tube until they have the sucking reflex). But they will feed the child expressed breast milk from the mother so I rented a pump for the first 3 months.”
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“Sometimes they'll let you hang a little mobile and stuff (more for the parents than the kids I think!)”
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“For entertaining your little one, if they’re old enough books you can touch and lift the flaps of, or press buttons to make noise might be good—that kind of thing really helped us.”
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“Bring books, music, soft toys. Things to touch. Most likely the first few days will be medicated and sleep filled, but it’s good to be prepared.”
Handling surgeries
“The anesthesiologist comes and discusses all the steps with you the day before. It is crucial that you do not nurse after the time they say to stop (assuming you are nursing still). I did by accident and we had to postpone a surgery and it was many more hours of distraction for her while I couldn't nurse. It was so easy to slip! I had to keep remembering NOT to nurse despite my desire to.”
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“Try to hydrate him as much as you can before you get there b/c they'll probably do an IV right away in triage.”
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“I nursed my daughter after all her early operations and I think it made a big difference to her, and to me. I think it’s really comforting for them and it makes you feel like you can do something to help.”
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“Ask to accompany your child into the operating room until they are asleep!”
Logistical tips
“Another thing that I will suggest is that they should do a blood test to see if they are compatible blood donors. Baby may need one or more blood transfusions. The mother probably will not be allowed to do this so the father should test or any other close relatives.”
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“Your cousin might want to look into getting an Amby Baby hammock for their baby. We got one for our daughter as she hated lying flat on her back, and she's loved sleeping in it since. I remembered that they were said to be good for preemies. The Amby is used in a NICU in Minnesota with good results. It is very comfortable and snuggly, and cradles the baby (the Amby website claims it is “womblike” but I'm not sure about that one!). It also keeps the infant in a more upright position which might be nice for preemies. It is around $300, but I thought it was well worth the price for my full-term infant and I will use it again with my next baby.”
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“Arranging life around the NICU has so much to do with how supportive the parents' employers are. My husband took advantage of the family emergency medical leave act so he could be at the hospital every day with me. That was a blessing.”
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“I would suggest appointing one person as the ‘communicator.’ A friend, family member who all other well-meaning friends and family can call for updates, etc. The last thing you need is pressure to return dozens of phone calls each day.”
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“FYI—the baby may not stay in hospital until July (his due date I presume). We thought both of mine might be in for that long, but both came home at 34/35 weeks gestational age.”
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“They will not release a baby out of the hospital normally unless they are a minimum of 4.5 lbs. As soon as our son hit that final ounce they got him right out of there.”
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“The hospital had our phone numbers and we were encouraged to call at any hour of the day or night for an update.”
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“We were able to work with the social director at ours (St. Luke’s/Roosevelt) and she found us temporary housing right across the street from the hospital. It wasn't the Ritz but it was clean (they were extra spaces not taken by the resident nurses, etc.) and we were so close and were able to go see him whenever we wanted. It was worth the $80 a day they charged us and it was covered by our FSA insurance money (NOTE: they can change their FSA election once a year due to a birth of a child so they may want to max that out and use the funds for the hospital bills, temporary housing, etc.)”
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“Good call to have a hotel room close by, that will save a lot of time and money commuting.”
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“For yourself, good noise cancelling headphones make a big difference, so you can watch/listen to something at night.”
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“Bring your kindle/magazine things to occupy your time because the days can be long!”
Kangaroo care
“Once the baby is off the respirator, kangaroo care is wonderful. I am convinced our babies improved due to Kangaroo Care. In the meantime, there's always reading and singing to the baby.”
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“I agree that they should try kangaroo care. I kangaroo'd my daughter the 4th day she was born and did it every chance that I had. Once the baby stabilizes, they should also ask to speak to the hospital's Physical/Occupational Therapist. The PT/OT can give them advice on how to hold the baby and how to give baby massages. Skin to skin contact goes a long way for the little ones.”
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“I read that another parent posted about kangaroo care -- excellent advice as it allows for both mommy and baby to connect. It won't be possible to do until the baby is extubated unfortunately. It was several days before I held either of my babies and it was so very painful not to be able to do that.”
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“We did Kangaroo Care with our girls and think it helped a lot (both the babies and ourselves). Our theory is that the babies came home 2 weeks early because we practiced this with them. Some nurses don't like to practice this, so I would suggest they try and get nurses that respect this desire (if they choose to do it). It is a wonderful experience to touch your baby, skin to skin, during a time when the baby spends 90% of its time isolated in a glass box. I am convinced our babies improved due to Kangaroo Care.”
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“Doing what they call ‘kangaroo care’ which means holding the baby skin to skin is supposed to really be helpful to them and as a parent I can tell you makes you feel WONDERFUL just to be close to them.”
Managing expectations and accepting negative emotions
“Be prepared to experience setbacks. The baby will have one step forward, 2 steps back, then a few steps forward, and one step back. It's a roller coaster.”
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“Ask the NICU about support groups. It's OK to cry, be depressed, and have ups and downs. There should be a social worker or psychologist at the hospital who can help. They should ask about this.”
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“For starters the hospital may have a social worker or parents support group they can join. It's not unusual for the mothers to experience a lot of guilt and possibly post-traumatic stress after a premature birth. This can linger for awhile. The parents are going to feel helpless as everyone around them takes care of their child who they probably can't even hold.”
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“These parents are going to need a lot of understanding and support. It's very difficult to see your child who doesn't have any fat on his body, poked with needles and hooked up to tubes and wires. It's hard for some parents to get close to their infants or bond with them immediately. Decision-making on everyday things seems trivial when your son is fighting for his life.”
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“A few things that I can suggest is to be prepared for things to be up and down, I saw babies be on and off respirators in the NICU, I even saw 1 baby on a respirator and then 1 1/2 days later he went home.”
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“Some days they will get great news, some days it will be awful—changes every single day. It literally takes a while for the shock to wear off, then believe it or not, it becomes the new normal to spend all day every day at the hospital.”
Staying positive
“Stay away from the internet except for professional health or hospital sites. Sometimes the internet is good, but it can also be alarming.”
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“Try to be positive. It's hard, but as the weeks progress, the baby will get bigger and you should document the progress.”
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“Don't let the hospital scare you each time a test arrives.”
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“Take pictures of the baby and print them. When we went home, we had pics of the babies around the house so we always felt they were nearby.”
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“In very short time, they will get to know the other parents in the NICU and it will be a comfort to know that others are in the same position.”
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“It's also important that they get some rest and take care of themselves.”
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“I'd make sure you schedule in time for you to shower, take a walk, get food, and have a bit of a break from the hospital every day.”
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“Don't believe all the tests. Our babies had heart murmurs, tested positive for cystic fibrosis, tested positive for hip dysphasia, eye problems, etc...all ended up to be errors in equipment and the babies were too small to accurately assess. Be patient, and always ask about the accuracy of every test. Some tests are serious, others are not.”
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“I am the mother of a formerly 1 pound 11 oz baby girl who spent three months in the hospital. She is now 8 pounds, home and doing extremely well. It was all quite an ordeal but you do get through it, and many, many, many such preemies wind up completely fine.”
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“The time goes fast and the progress helps.”
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“‘One day at a time’ is the best advice I can give.”
Tips for support folks
“On my part I really appreciated those who were sensitive to our situation and who acted like they would if my children had been delivered full term. For instance my husband's office sent a huge bouquet of flowers to congratulate us. The cards and little gifts—preemie clothes, little items for the children's incubators, etc. that we received from people. The family and close friends who came by the NICU to see the kids. For many people they didn't know how to act and basically did nothing which I completely understood. However, I'll always remember the thoughtfulness of those who did act.”
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“We had friends and family cook meals for us and brought them to the hospital. Otherwise, the next few months will be spent eating horrible hospital or fast food nearby. This was an extraordinary help.”
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“A blanket to cover the incubator could be a good gift. Also beanie babies are apparently good for support inside the incubator. I think a blanket to take to the hospital for mom would also be nice. Presbytarian offers parents a $6 coupon for the hospital snack bar, but parking and food are regular issues for visiting parents.”
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“I found getting my sister or a friend to come and have dinner with me while my husband stayed at the hospital really useful for breaking things up and making me feel at least partially normal.”
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“I had a friend visit me in the hospital on day 3, which felt so important. Being in the hospital was very isolating to me and just felt like I wasn't part of the regular world (partly because we didn't know how long we'd be there, and exactly what was going on with my son), so having a friend visit was a nice break and reminder that the real world still existed!”
"In reality you need very little 'stuff' for when she first arrives home, but depending on her feeding situation I would be prepared to have plenty of bottles. I worked with a LC to get our baby onto the breast but it took a few weeks and I was 'triple feeding' for a while. It was helpful to have a LOT of bottles and nipples, as well as extra pump parts. If you don't have extra, an 'ISO' post on the classifieds will likely do the trick! Have all of your parts sanitized and ready to go, make sure your bottle warmer works, etc. I had a meltdown on day 1 because our brand new bottle warmer was a dud. Anything else you can do to set up your apartment is good - get the bassinet ready, diaper station, etc. In the next few days, don't be shy about asking ALL of your questions at the NICU - the nurses are incredibly knowledgeable. If they don't offer it, ask them to show you how to give [your baby] a bath. It is such a confidence boost and you'll feel really prepared the first time you do it at home.
You will find your new rhythm as a family quicker than you think :) Enjoy every snuggle"
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"One thing that I think was tough for me was to go from feeling like J. needed constant monitoring and ICU care, to having no support at home (which may or may not be your experience, so please feel free to ignore me if the following doesn’t apply to your circumstances). The hospital offered to have a nurse come visit us once a week, and though we accepted, they unfortunately did not have anyone in our area. I think letting go of that anxiety was my biggest struggle (that I still have a hard time with some days). Here are a few things that helped me through the worst of that anxiety:
We found it helpful to get a hatch changing pad to weigh our son. Because J. was so small, I felt (and feel) more comfortable being able to track their progress outside of the doctor’s office, especially as they space out more and more. I would just be careful not to let yourself obsess over it.
Trying to keep in mind that they wouldn’t have let my son go if they thought we couldn’t handle it. Easier said than done, but helpful nonetheless.
I liked using the owlet monitor at the outset to feel like we had another layer of protection on top of swaddling and putting him on his back in a bassinet by the bed. I really didn’t use it THAT much, but when I felt my anxiety creeping up, I found it helpful. It’s definitely a little pricey for how infrequently I used it, but given how little sleep we got at the beginning, it was worth it for me.
Also, this isn’t preemie specific, but don’t be afraid to size up in diapers the minute you can. It will save you from the blowout diapers. I was weirdly sentimental about sizing up (not that I didn’t want him to get bigger, but like any new mom, the tiny 'newborn' (or newly home) phase is also so special) And, if you do have a blowout, wash everything as soon as possible to avoid staining. I feel like this was the best practical advice anyone gave us and has helped to avoid a lot of hassle."
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"I imagine that needs vary SO much from family to family, so I hope you are able to get advice for your specific needs.
Only thing I can imagine approaching universal usefulness is a microwave sterilizer like this one from Avent. SUPER useful for us, reusable, and doesn't involve boiling pots of water. We used water filtered at our sink for it."
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"These are the things I found helpful:
-Swaddles!! They loved to be wrapped tight to feel secure and rest well. Both self swaddling and the velcro ones are great!
-I definitely agree with lots of bottles and nipples because it can be hard to keep up with dishes. The same goes for clothes! They go through a lot so if it's hard to do laundry, having extra helps. Lots of giveaways on PSP! Also, I love Carters Preemie and up clothes. SO great and not outrageous.
-Diaper Genie to keep the smell to a minimum.
-MAMA ROO!! I got mine for $50 on PSP, don't buy new! A life saver if you don't always have help and need to quickly use the bathroom or just can't get her comforted.
-Mobile to entertain so you can shower or whatever if you don't have a lot of help at home. R. LOVES this one tiny love classic mobile. It has stimulating black and white, music and bright colors with cute animals that they can see. Not good for soothing to sleep, but for when you need to get stuff done. He's obsessed with it and dances and coos happily while I get some things done. My husband works and no family, so it's been really lovely!
-Bring home medicine syringes from the NICU, the ones that come with medicine aren't as accurate for Preemies.
Those are the major things that have really helped me take care of a busy preemie on my own. Hope this helps!"
One parent of preemies asks: "One of the twins won't latch at all (at 4.15 lbs, the hospital lactation consultant mentioned that her mouth is simply too small really) and the other one (at 6.4 lbs) won't do more than a few suckles once on - gets too sleepy/tired. Has anyone managed to actually get the nursing back on once the twins are 'bulked up'? I'm having a tough time finding a lactation consultant who will do home visit rights now (if I even wanted this right now? Not sure), but I'd love to hear any other moms' experiences with this - whether this ended up with nursing or not. I breastfed my other two children and am very hoping to get the nursing working, although obviously 'fed is best.'"
Members suggest...
"I can speak to the latching concerns.
When I left the hospital with my 5lb and 6lb at birth twins, neither were productively latching. The girl, who was larger, did slightly better, but not by much. The first week was really stressful and frustrating trying to continually offer both twins my breast, then actually giving them formula, and pumping to try to encourage my milk to keep coming in. At the end of the first week home, they started to nurse directly for some feedings and I was pumping enough that we could eliminate formula at that point.
I wouldn't say they really were 100% breastfed - as opposed to bottled breast milk - until they were a month old. Now they are 16 months and I'm still nursing morning and night plus pumping for an afternoon bottle. So, yes, I'd say it is totally possible to become 100% breastfed after a rocky start and it's also possible to produce enough volume to satisfy both twins!
Hope that's some comfort."
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"I had latching issues too with my twins (now 4 months) and went through a ton of consults. I ended up pumping often during the day and putting them on formula very early on. My issues were two fold - latching and low supply. The latching got better about two months in and they were both latching well. So yes, they can definitely get back on after they bulk up a bit. My supply never really went up. I was pumping about 8 times a day and was only able to produce enough to make up 20% of each baby’s daily intake and so I stopped at 3 months. They’ve been on formula ever since (Neosure for premie babies) and have been doing well. We just have to do our best at the end of the day. But I think if you have no issues with supply and are able to keep it up with pumping you can definitely get them to breastfeed after some time when they are ready. Hope that helps!"
More words of advice for parents of preemies from Park Slope Parents members
“The NICU is a scary place—one NICU nurse we were close to likened it to a war zone. It's the truth. It's important to spend as much time as they can at the hospital, but that they also take breaks. Go out to dinner at least, just to get some time away.”
“The hardest thing for us was the other patients and their families. Everyone in these ICUs are going through heavy shit and every one is stressed out so it’s hard to tell someone to turn their TV down or be quiet, I just felt guilty. But most hospitals have curfews so TVs have to be turned off by 10 and nighttime is quiet time.”
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“Going to the hospital was the hardest, actually leaving the hospital without the baby is the hardest, I would say first and foremost prepare them for that!! It didn't hit me until I was walking out of the hospital & it was really heartbreaking! I was lucky enough to have my daughter in the hospital for only 10 days, but I did see a lot of other parents who had been there a much longer time. They shared the duties, some nights dad would be there other nights mom would be. There were some days where they just called to check in on the baby. For me I was there every morning at 9:00 fed & changed her, hung out in the cafeteria, came back at 12:00pm fed & changed her, left, came back at 3:00pm fed & changed her, then met my husband after he got off work at 6:00pm then we were home for the night and would call to check sometime in the evening.”
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“I also have a friend who delivered at 5.5 months and her son is ALSO doing wonderfully (he was under 2 lbs). I think knowing her story when I went in kept me from losing it. I had no fear at all that time was all he needed to get strong enough to come home.”
